Dictionary of BC Lingo?

Ahhhh, the magic of a breast cancer diagnosis: it's an invitation to become a specialist in an area of medicine you really don't want to know anything about. Because so often you have choices in treatment options, though, you pretty much have to start studying. Oh, sure, Italian would be FUN, but at this point, breast cancer lingo will not only be much more practical, but also you'll use it very frequently, hopefully just for a while...

After that abbreviations lesson, breastcancer.org has some good information about treatments, etc., that are helpful. Do NOT linger over the list of possible side effects of anything like chemotherapy or Tamoxifen - I made that mistake early on, scaring myself to death late at night worrying about things that in the end I never experienced. Focus on local treatment - removing the cancer they have found. Then you can move on to Dr. Susan Love's "The Breast Book," which has a LOT of information. I found it to be very helpful.

How big do they think your tumor is? Sometimes it's hard to figure out how large an ILC tumor is because of the way it can grow in "sheets." Mine was more of a concentrated globule, visible on ultrasound and MRI. Do they think it is in your lymph nodes? They check your lymph nodes to see if the cancer has made an attempt to leave the breast and go into the body. What is the surgeon suggesting? Are you a candidate for a lumpectomy, where they just take out the tumor and an area of tissue surrounding it, or do you have a larger tumor or multiple tumors, which might indicate that a mastectomy would be the first choice for surgery?

One of the worst parts of the process for me was the "surgery selection process." I could've had a lumpectomy or even selected a bilateral mastectomy - my choice. It was so stressful: there was no definitive recommendation, and I didn't know how to choose. I did a lot of reading, after which I decided to start small and go for the lumpectomy. You can always have more surgery, but you can't put things back. The long-term survival and spread rates are the same for mastectomy OR lumpectomy with radiation.

Before having surgery, I had appointments with a general surgeon, and then a breast surgeon. I also saw a plastic surgeon (to discuss the process if I ended up with a single or double mastectomy with reconstruction), and I visited with a medical oncologist. I also had breast MRI's, to determine if there was anything else in there, and a preoperative CT scan and a bone scan. It was a fun summer!

Consider taking someone with you to see the surgeon. It can be stressful, and two heads are better than one for remembering details.

Good luck to you!

Coleen

Hi cammy2,  Welcome.  You are at a very good web site for information and support.  I took a small digital recorder to meetings with doctors to help me remember what was said. (Good thing, too, as I was emotional and not able to remember much of anything.)  Having someone with you really helps, too.  I also got copies of every test report, every lab report, etc.  Something that might have helped me that I didn't have was someone to talk to who had been through it before.  My oncologist's office had a service called "breastfriends" where they would have someone  who had a similar diagnosis and was years out from treatment contact you. It would have helped to have someone like that to talk to.  I didn't find out about this until much later. Getting opinions from other surgeons, oncologists, and plastic surgeons helped me feel more confident in my treatment decisions.  I found that I needed to remember that it takes time for all the tests they need, I was feeling it took too long to start treatment.  I ended up having chemo, and it was done before my surgery. What you need varies depending on your diagnosis and stage.

As you continue through the process of being diagnosed, you will have many questions.  You also may just want to share your feelings.  I remember my feelings were all over the place!  Please come here whenever you want help or to talk.  G 

Sorry about deleting my previous post I thought everything i wrote was about me.

Whatever you do or not do is normal. We all deal differently. Please try not question yourself okay?. Yes it is a long journey but at the end you come out stronger. We are here for you.

Hugs

Sheila

cammy.. That was exactly my issue. I was worried about my daughters, and i didn't want my friends , family treating me like you poor thing way. But I did threw away the night gown was wearing when I got the the phone call about the DX. Sometimes it gets overwhelming to calm the people around you. Its almost like you feel sorry for them that you got BC.

Hi Cammy2,

How did your appointent go today?  As I remember back nearly 4 years ago to that time, it is a whirlwind of activity and decisions.  As Kleenex has pointed out before, you are left to make decisions that you never thought you'd have to make on your own.  Do I do lumpectomy or mastectomy?  That may be the first of many decisions.  Reconstruction?  What type?  There will be many questions and somehow, the answers will and DO come to you.  You will know what feels right after you sit with it a bit.  And don't feel pressured to make any super quick decisions.  Most of the time, ILC tends to be a slow grower so if you take a few weeks to choose your surgery and surgeons, then so be it.  You'll be more confident with your decisions in the end.

When I was first diagnosed, the doctor mentioned lumpectomy + rads.  Then they did the MRI and found another small area of concern so recommended mastectomy.  After complety sobbing for the next few days, I met with plastic surgeons and got my game plan on.  My breast surgeon removed my nipple and was able to do the mastectomy through this small incision (they did also make one very small incision-about a 1-inch straight line- in the upper area of my left breast that I can hardly see anymore).  I chose to use my latissimus (back) muscle with implants for reconstruction.  They used the skin from my back to recreate my nipple.  It all may sound horrendous and I'm sure at the time, I thought it did too. However, it really is beautiful work and I am quite amazed still at how nice the doctors made my new breast look.  Several months later they tattooed the new nipple and now (especially if I squint!) when I look in the mirror, my breasts look pretty symetrical.  The physical changes will pass and you will find yourself in a place of acceptance.  For me, the emotional healing took longer.  I kept asking "What the hell was that all about???"  I'm still asking it

Hi, Cammy2 -

You are correct in that you don't really "know" anything until after the surgery. At the same time, it doesn't hurt to continue to learn more. Sounds like you have a great surgeon, and the PS sounds good as well - I have seen women on her complain that they weren't given "options" for reconstruction in some cases, as the doctor they saw only did tissue expanders and implants. You have a good collection of questions you're compiling - check out the Reconstruction thread for information and to ask questions. Also, somewhere I have a good website from when I was looking at the possibility of a bilateral - I'll try to find it again and post it for you. The PS I saw didn't think I had enough tummy fat to do a TRAM sort of surgery, although I certainly think there's enough there to whip up a breast or two! So far, I've just had the lumpectomy, but you never know what the future holds...

I drove the medical oncologist I saw prior to surgery nuts with my questions. "What if it's 2 cm? What if it's bigger? What if the nodes are clear? What if they are not clear?" Etc. Sometimes 2 cm is considered the "cut off" between chemo and no chemo, by some oncologists, including the one I saw pre-surgery. As it turned out, with a 2.1 cm ILC tumor I did NOT get offered chemo as my Oncotype DX score was 11 and it was thought it would not benefit me. It would be good to ask the oncologist about this test. Hormone receptor positive is "good," in that they have anti-hormonal medication you can take that tests indicate will reduce your risk of recurrence and mets - Tamoxifen or one of the aromatase inhibitors, like Femara, etc. I hate surprises, so in my case I tried to anticipate and ask about everything...

I also had a friend who'd been diagnosed about a year before me, with triple negative breast cancer. She had lumpectomy and radiation - and she even came with me a couple of times when I went for radiation and we'd have lunch afterward. SOOOO helpful! No one's experience is exactly the same, but how nice to have someone who understands the process and speaks the language!

Coleen

Hi Cammy,

I am an ILC gal, had a R mast with DIEP reconstruction.  The DIEP (sometimes called free tram) is similar to the TRAM, but no abdominal muscle is compromised.  I saw three  ps, two told me I was not a canditate for TRAM (neither did DIEP surgery).  I believe it was the right choice for me, as I'm pretty active and was more worried about my skiing than my foob (ha, another abbreviation), so I was sure I wanted to keep my abdominal muscle. The TRAM and DIEP do not involve using implants, the "fat" from your abdomen is used.  The DIEP spares the abdominal muscle but is a more complex micro surgery and not too many doctors do them.  I was also sure that I wanted to keep the unaffected girl. The surgery and recovery were pretty tough, but my foob looks  good.  The abdominal incision is  huge (16 ") scar and is always tight, so I need to stretch it out every day. That was something I didn't expect..

 My suggestion is to get at least two opinions not only from plastic surgeons, but oncological or breast surgeons. There is so much information to digest in the beginning.  But take your time making this surgical decision.  You'll know what's right for you after gathering all the information and noodling on it for a while.

PM me if you want any of the detail about the surgery, and I'll share what I know

MM

Hi cammy2,  I had expanders with saline implants after my bilateral mastectomy (right breast was prophylactic for the same reason you stated).  I didn't have enough fat anywhere to do anything else.  Don't get me wrong, I'm not skinny or anything, just not a good candidate it seems.  Anyway, I posted because as it turns out I'm glad I had the reconstruction I had.  The results are good and the impact on my body was minimal compared to other options. You are fortunate to have such an experienced, close friend.  You are also fortunate in the professionals who are organizing and providing care.   Good luck with making your decisions. G.